Hi @Juliane morse code in both ears still, my condition has changed so much since May. My reactive left ear has calmed right down and all of a sudden last week it started in the right. With the sensations I've got in the right I now believe I've had TTTS/MEM since the onset due to acoustic shock.
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Whether the morse code is linked to this or from damage to my auditory system only time will tell. Horrible at bedtime and causing sleep issues. Is the forever changing nature of it all a good thing? What do you think? How are you getting on, I saw you'd had a setback, so sorry to hear.
What is TTTS/MEM?
Thanks for your kind words! Yes going through horrible changes with new loud head sound and in general louder volume. I actually have no words to describe the state I am in currently. Think I am in some kind of shock. How are you coping emotionally? I somehow think our emotions play a role in all of this.
So sorry Juliane, it's a rollercoaster isn't it. I'm not coping well emotionally at all tbh, I try my best to get through the day for my remote job, then of an evening sit in with my folks (who as you know I had to move back with), watch some TV and do far too much research.
I've tried doing meditation and mindfulness, I go for at least one walk a day and that's when I get the most relief to be honest. My quality of life has gone to pretty much zero, I don't do anything anymore as I'm in so much discomfort constantly. I'm just trying to hold onto my job to give myself at least 18 months to two years to see if I can improve.
Like you I'm in utter disbelief at the situation I find myself in and what a simple MRI scan has done to me. I miss my life in a big way. TTS/MEM is like a myoclonus of the ear muscles I'm pretty sure I have that as well as damage to my hearing system due to the morse code sounds.
It sounds like you are describing my life! I also work remotely, try and go for at least one walk per day with ear muffs on and spend my evenings watching a bit of tv while researching T related stuff on my phone. What a life! I don't enjoy life anymore either but as you I have a tiny hope that time can be some sort of healer.
Truly sorry to hear you are struggling too :-( Would you be able to socialize a bit if you wanted to or is it the T and H holding you back?
And now entering the winter season, I can already feel my mood and depression being impacted negatively:-(
How do you handle online meetings?
I can just about handle online meetings they don't set the reactiveness off as much as they used to. The most socialising I've done is just going to a friends for a few drinks and I don't enjoy it as I'm constantly monitoring the chaos from my ears and I'm so miserable to be around I don't wish to bring others down. I try to be positive most days but keep hitting a wall and having mini breakdowns.